Abstract
Background This study aimed to assess patient attitudes as part of the planning process for a large-scale effort to collect genetic samples for research from excess clinical blood specimens (‘DNA Databank’ project). Method A pre-tested, 38-item questionnaire was mailed to a random sample of 5,000 inpatients, outpatients, and emergency department patients. Results Approximately 20% of patients responded (n = 1003). Most were comfortable with anonymized genetic information being used for research (89.3%) and supported the potential benefits (98.7%). A binary logistic regression on the level of comfort with the DNA program shows that the variability in respondents’ feelings about the program can best be explained by beliefs, age, and health status. Respondents were attitudinally segmented into 5 distinct categories. Conclusions These data indicate general acceptance among respondents, but a subset of the population would be opposed to the program. This reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample. The effects of prior beliefs would benefit from further exploration.
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Abbreviations
- VUMC:
-
Vanderbilt University Medical Center
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Acknowledgements
We would like to thank Dan Byrne and Sheryl Zhong, VUMC Department of Biostatistics, for their assistance with the statistical analyses presented in this article. This article contains original data; Jill Pulley and Margaret Brace have had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. No external funding was provided for this study. Authors do not have financial conflicts of interest.
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Appendix: Questionnaire
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Pulley, J.M., Brace, M.M., Bernard, G.R. et al. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Banking 9, 55–65 (2008). https://doi.org/10.1007/s10561-007-9051-2
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DOI: https://doi.org/10.1007/s10561-007-9051-2